Tuesday, August 19, 2014

EIGHT species of Borrelia found in the SF Bay Area's Alameda County


Remarkable diversity of tick or mammalian-associated Borreliae in the metropolitan San Francisco Bay Area, California.
Fedorova N, Kleinjan JE, James D, Hui LT, Peeters H, Lane RS.

Ticks Tick Borne Diseases. Online before print, 2014 Aug 13. pii: S1877-959X(14)00160-5. 

http://doi.org/10.1016/j.ttbdis.2014.07.015

Abstract

The diversity of Lyme disease (LD) and relapsing fever (RF)-group spirochetes in the metropolitan San Francisco Bay area in northern California is poorly understood. We tested Ixodes pacificus, I. spinipalpis, and small mammals for presence of borreliae in Alameda County in the eastern portion of San Francisco Bay between 2009 and 2012. 

Analyses of 218 Borrelia burgdorferi sensu lato (Bb sl) culture or DNA isolates recovered from host-seeking I. pacificus ticks revealed that the human pathogen Bb sensu stricto (hereinafter, B. burgdorferi) had the broadest habitat distribution followed by B. bissettii. Three other North American Bb sl spirochetes, B. americana, B. californiensis and B. genomospecies 2, also were detected at lower prevalence. 

OspC
 genotyping of the resultant 167 B. burgdorferi isolates revealed six ospC alleles (A, D, E3, F, H and K) in I. pacificus. A novel spirochete belonging to the Eurasian Bb sl complex, designated CA690, was found in a questing I. spinipalpis nymph. Borrelia miyamotoi, a relapsing-fever (RF) group spirochete recently implicated as a human pathogen, was detected in 24 I. pacificus. 

Three rodent species were infected with Bb sl: the fox squirrel (Sciurus niger) with B. burgdorferi, and the dusky-footed wood rat (Neotoma fuscipes) and roof rat (Rattus rattus) with B. bissettii. Another spirochete that clustered phylogenetically with the Spanish R57 Borrelia sp. in a clade distinct from both the LD and RF groups infected some of the roof rats. 

Together, eight borrelial genospecies were detected in ticks or small mammals from a single Californian county, two of which were related phylogenetically to European spirochetes.

http://doi.org/10.1016/j.ttbdis.2014.07.015
 
__._,_.___

 

----

Saturday, August 16, 2014

Two more Lyme-associated Parkinsonism references

Neuroborreliosis in a patient with progressive supranuclear paralysis. An association or the cause?

TITLE: [Neuroborreliosis in a patient with progressive supranuclear
paralysis. An association or the cause?]


VERNACULAR TITLE: Neuroborreliosis en un paciente con paralisis
supranuclear progresiva: asociacion o causa? 

AUTHORS: Garcia-Moreno JM;
Izquierdo G; Chacon J; Angulo S; Borobio MV

AUTHOR AFFILIATION: Departamento de Inmunologia, Hospital Universitario Virgen de la Macarena, Sevilla, Espana. Ay...@arrakis.es

SOURCE: Rev Neurol 1997 Dec;25(148):1919-21

CITATION IDS: PMID: 9528031 UI: 98188456

ABSTRACT:

INTRODUCTION: Many different neurological conditions may be seen in the
later stages of Lyme Disease, such as blindness, epileptic crises,
CVA, extrapyramidal disorders, amyotrophic lateral sclerosis, and
dementia may be yet another form of presentation of chronic infection
due to Borrelia burgdorferi (Bb). Progressive Supranuclear Paralysis
(PSP), a disorder of unknown aetiology, considered to be the commonest
cause of Parkinsonism-plus, one of the symptoms of which is dementia,
has never been mentioned in this type of differential diagnosis.


CLINICAL CASE: We present the case of a 78 year old man with sub-acute
mental deterioration, Bb positive serology in both plasma and CSF, and
with clinical and epidemiological features compatible with Lyme's
Disease. Complementary tests were negative. The syndrome corresponded
to Lyme's Disease and improved after treatment with ceftriaxona.

CONCLUSIONS: We consider aspects of the aetiology of PSP which are still not clear. In our patient, the aetiology seemed to be Bb infection, according to the criteria of the original description of the disease and in view of the neuropathological findings which have shown Bb in the substancia nigra of the mid-brain and the existence of an animal model in which Bb shows a particular tendency to colonize infratentorial structures. 

MAIN MESH HEADINGS: Borrelia
burgdorferi/*isolation & purification
Lyme Disease/*complications
Substantia Nigra/*microbiology
Substantia Nigra/*pathology
Supranuclear Palsy, Progressive/*diagnosis
Supranuclear Palsy, Progressive/*microbiology
ADDITIONAL MESH HEADINGS: Aged
Antiparkinson Agents/therapeutic use
Case Report
Ceftriaxone/therapeutic use
Cephalosporins/therapeutic use
Dementia/etiology
Electroencephalography
English Abstract
Facies Frontal Lobe/radionuclide imaging Human Lyme Disease/drug
therapy Magnetic Resonance Imaging Male Parietal Lobe/radionuclide
imaging Supranuclear Palsy, Progressive/drug therapy Temporal
Lobe/radionuclide imaging Tomography, Emission-Computed, Single-Photon
1998/04 1998/07 02:02 PUBLICATION TYPES: JOURNAL ARTICLE CAS REGISTRY
NUMBERS: 0 (Antiparkinson Agents) 0 (Cephalosporins) 73384-59-5
(Ceftriaxone) LANGUAGES: Spa


Title: [Neurologic forms of Lyme disease. 12 cases]
Authors: Viader F, Poncelet AM, Chapon F, Thenint JP, Dupuy B, Morin P,
Lechevalier B
Source: Rev Neurol (Paris) 1989;145(5):362-8
Organization: Service de Neurologie Dejerine, CHU de Caen.

Abstract:
Twelve cases of Lyme disease with neurological complications are
reported. Seven patients had meningoradiculitis of the Garin-Bujadoux-
Bannwarth type, with facial palsy in 2 cases. In 1 case the radiculitis
involved only the cauda equina. Two more patients had meningomyelitis.
Of the remaining 3, 1 had subacute inflammatory polyneuritis with
albumino-cytologic dissociation, 1 had probable dorsal epiduritis, and
the last one developed parkinsonism and communicating hydrocephalus
after an otherwise classical meningoradiculitis. Three patients
recalled a tick bite but only one a cutaneous eruption. No arthritis or
cardiac involvement were observed. In 2 cases the CSF contained pseudo-
neoplastic cells. Severe pain was a prominent feature in most cases.
Pain consistently and rapidly improved on high-dose intravenous
penicillin, while other signs or symptoms (e.g. paresthesias or
fatigue) often lasted several months. Parkinsonism and hydrocephalus
were not influenced by penicillin, and both required specific therapy.
Isolated neurological (both central and peripheral) involvement is not
unusual in Lyme's disease and may give rise to a wide range of signs
and symptoms. This diagnosis is to be considered even when other
features of Borrelia burgdorferi infection are lacking.

Keywords:
Adult, Aged, English Abstract, Female, Follow-Up Studies, Human, Lyme
Disease, CEREBROSPINAL FLUID, COMPLICATIONS, DIAGNOSIS, Male, Middle
Age, Myelitis, CEREBROSPINAL FLUID, DRUG THERAPY, ETIOLOGY,
Penicillins, THERAPEUTIC USE, Radiculitis, CEREBROSPINAL FLUID, DRUG
THERAPY, ETIOLOGY, Serology

Language: Fre

Unique ID: 89297964

Friday, August 15, 2014

Social causes of Lyme, Parkinson's and depression?

I find this study to be quite interesting and a nuanced conception of how an individual's work, social standing and self image could affect his/her immune system health and potentially create a cascade effect leading to clinical depression and even neurological degeneration. I have read over the years that, for example, the experience of humiliation is one of the most difficult life circumstances to navigate and recover from. In some cultures, public humiliation is tantamount to death, or worse. Historically speaking and cross-culturally, exile and excommunication have often been seen as more deeply punitive than being condemned to death. 

-Bob

Psychol Bulletin. Author manuscript; available in PMC May 1, 2014.
Published in final edited form as:
Published online Jan 13, 2014. doi:  10.1037/a0035302
PMCID: PMC4006295
NIHMSID: NIHMS561676

From Stress to Inflammation and Major Depressive Disorder: A Social Signal Transduction Theory of Depression

University of California, Los Angeles
Correspondence concerning this article should be addressed to George M. Slavich, Cousins Center for Psychoneuroimmunology, University of California, Los Angeles, UCLA Medical Plaza 300, Room 3156, Los Angeles, CA 90095-7076. Email: ude.alcu.tendem@hcivalsg
George M. Slavich and Michael R. Irwin, Cousins Center for Psychoneuroimmunology and Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles.
The publisher's final edited version of this article is available at Psychol Bull

Abstract

Major life stressors, especially those involving interpersonal stress and social rejection, are among the strongest proximal risk factors for depression. In this review, we propose a biologically plausible, multilevel theory that describes neural, physiologic, molecular, and genomic mechanisms that link experiences of social-environmental stress with internal biological processes that drive depression pathogenesis. Central to this social signal transduction theory of depression is the hypothesis that experiences of social threat and adversity up-regulate components of the immune system involved in inflammation. The key mediators of this response, called proinflammatory cytokines, can in turn elicit profound changes in behavior, which include the initiation of depressive symptoms such as sad mood, anhedonia, fatigue, psychomotor retardation, and social-behavioral withdrawal. This highly conserved biological response to adversity is critical for survival during times of actual physical threat or injury. However, this response can also be activated by modern-day social, symbolic, or imagined threats, leading to an increasingly proinflammatory phenotype that may be a key phenomenon driving depression pathogenesis and recurrence, as well as the overlap of depression with several somatic conditions including asthma, rheumatoid arthritis, chronic pain, metabolic syndrome, cardiovascular disease, obesity, and neurodegeneration. Insights from this theory may thus shed light on several important questions including how depression develops, why it frequently recurs, why it is strongly predicted by early life stress, and why it often co-occurs with symptoms of anxiety and with certain physical disease conditions. This work may also suggest new opportunities for preventing and treating depression by targeting inflammation.

Sunday, August 10, 2014

New research that Borrelia does produce persister bacteria

A note from someone in the Lyme community:

Had you heard the news out of ASM2014 (American Society for Microbiology)? Kim Lewis from Northeastern has been doing research on what are called persisters (bacteria that can survive antibiotics without being killed). He had been granted about $6M in NIH (National Institute of Health) funding plus was supported by the Bill and Melinda Gates Foundation for chronic TB due to persisters. 

So he is the real deal in chronic infections and drug discovery to cure TB persisters and also has a culture team for bacteria that are difficult to culture. He was funded $.5M by the LRA (Lyme Research Alliance) to see if Borrelia has persisters which might explain chronic Lyme and lead to a cure

At ASM2014 they released the first results and Borrelia does produce persisters. This might be the most important Lyme news in a long time. Kim Lewis was the researcher who discovered and cured MRSA chronic infections due to persisters and not due to mutant, resistant bacteria.

Watch Kim Lewis's video on the Paradox of Chronic Infections.... Its worth watching! This video was done before the recent announcement at ASM 2014 but watch with that discovery in mind and that this researcher received $6M from the NIH. The NIH is cautious in selecting grant recipients, as is the Bill and Melinda Gates Foundation.

Is Lyme disease a feminist issue?

From our last KPFA Lyme interview. New article in Truthout entitled: Lyme Disease is a Feminist Issue: An Interview With Sini Anderson: http://truth-out.org/news/item/24405-lyme-disease-is-a-feminist-issue-an-interview-with-sini-anderson

Please like and share............

Friday, August 8, 2014

Tragic death of a 2-year-old from a tick bite

Tragic death of 2 yr. old in Middleburg, VA  from tick-bite transmitting Rocky Mountain Spotted Fever....  

Posted: Friday, August 8, 2014 6:45 am
By Dulcy Hooper For Middleburg Life | 0 comments
It's no easy task to deal with a devastating personal loss--the death of a beautiful, healthy young child--and use it to help others avoid the same tragedy, but Brenda Klepper of Berryville is doing just that.
Less than three months ago, Amberlynn Cross, Klepper's great granddaughter, was playing outside at the home of friends of her parents, Emily and Michael Cross, also of Berryville. She was just a few days shy of her second birthday.
"Amberlynn loved to play in the dandelions and try to blow them," Klepper said. "But then she would become frustrated and end up wildly shaking them in her hands so that the seeds would blow. She was playing in the dandelions the day she got bit by the tick."
Her parents found the tick later in the day and removed it. Five days later, on May 15, Amberlynn had developed a rash and a 105-degree fever and was taken to her pediatrician. Although the physician was informed about the rash and the tick, he diagnosed Amberlynn with a viral illness and advised her parents to take her home and keep an eye on her temperature.
Read the full story here:



Wednesday, August 6, 2014

Great TV Coverage of Lyme - Amy Tan, Ray Stricker

Here's a terrific half-hour program from Bay Area TV channel 7 about Lyme. Spread it around to your friends and family. It's a very good intro for folks who don't want to watch an entire movie-length piece such as Under Our Skin.

I hadn't heard Amy talk about her symptoms in much detail before. Dr Stricker provides the necessary info and is to the point and well spoken, as usual. This is the first time I have heard that the CDC is thinking maybe the 300,000 number of new infectees per year may be too low an estimate, too, and that is now thinking that as many as 1 million may be more like it. Considering that Germany alone claims 1 million, the US could certainly have as many cases. 

Click the link and the video should play on your computer. 

http://abc7news.com/health/beyond-the-headlines-lyme-disease/242626/

BEYOND THE HEADLINES
August 3, 2014
Lyme Disease
Hosted by ABC7's Cheryl Jennings


Each 
Beyond the Headlines show focuses on a different topic affecting the people who make up the fabric of the Bay Area. What do you know about the disease that you could get from a tick bite? It's called Lyme Disease. 

At first, the U.S. Centers for Disease Control only reported about 30,000 cases a year. But, new studies reveal the numbers could be far higher... as many as 300,000 a year. Now, the CDC estimates that number could be as high as a million cases a year!

Studio Guests

Amy Tan
Award-winning Author
Facebook 
@AmyTan

Raphael Stricker, MD
Lyme Disease Expert
Union Square Medical Experts
Facebook
@UnionSquareMed

Kate Steele
Mother of 2 
A Journey of Faith and Healing
http://HelpAriAndDannie.com 

Ari Steele-Baker
College Student
A Journey of Faith and Healing
Facebook

Other resources:
Lyme Disease Association
International Lyme and Associated Diseases Society 
Lyme Light Foundation





Upcoming scientific symposium on Lyme disease

Hartford State Capitol to Host First of its Kind Scientific Lyme Disease Symposium

http://www.streetinsider.com/Press+Releases/Hartford+State+Capitol+to+Host+First+of+its+Kind+Scientific+Lyme+Disease+Symposium/9716282.html


August 4, 2014 10:00 AM EDT Response to a call-to-action by CDC's Dr. Paul Mead; Press Conference Planned

HARTFORD, Conn.--(BUSINESS WIRE)-- The Coalition Against Lyme and Related Borrelioses (CALRB, www.calrb.org) is hosting a symposium on September 16, 2014 at the State Capitol building in Hartford, Conn., to discuss new scientific approaches to Lyme disease testing and diagnosis. The symposium is believed to be the first of its kind devoted strictly to discussing new and evolving DNA sequencing based testing techniques.

"The symposium will feature a diverse group of speakers from the scientific and medical communities coming together for the first time to discuss new and evolving Lyme disease testing techniques," said Kevin Moore, president and executive director of CALRB.

Specifically, presenters will be discussing DNA sequencing based testing for Borrelia burgdorferi, Borrelia miyamotoi and other pathogenic borreliae in patient samples for reliable diagnosis of this disease complex, said Moore.

"The symposium is a call to action in response to a recent desire expressed by Dr. Paul Mead, chief of epidemiology and surveillance for the CDC's Lyme disease program, for more reliable and conclusive Lyme disease tests," Moore said, adding, "This symposium hopefully gets us one step closer to newer, more effective tests."

In a recent interview with ABC News, Dr. Mead acknowledged the limitations of the two-tier serology test, long the standard for Lyme disease testing, and said, "We would love to have better tests available, but it's not as easy as it sounds."

Dr. Mead has advised the symposium organizers of a conflict in his schedule that will make it impossible for him to attend,Moore said. However, in seeking the CDC's guidance, he has asked Dr. Mead to consider designating another CDC scientist to attend. "The FDA, Infectious Diseases Society of America and the College ofAmerican Pathologists are also invited," said Moore.

More than 300,000 cases of Lyme disease are diagnosed annually in the United States. The illness is increasing across the nation, reaching almost epidemic proportions in some areas. Lyme disease, or, more accurately, the borrelia bacteria that causes the illness, dates back millions of years. It wasn't until 1975, however, when several cases turned up in Lyme,Connecticut, that the illness was named. Serology tests for Lyme disease were introduced in the 1980's, but the two-tier serology test has been the chief testing tool for the diagnosis of Lyme disease since 1994. At the time, serology tests were considered a significant advancement in diagnostic medical science. However, medical practitioners and scientists readily concede that the tests can be inaccurate and have a high rate of false positives or false negatives resulting in missed diagnosis and improper treatment.

"With the dramatic increase in the numbers of Lyme disease cases in recent years, has come demand for more reliable tests,"Moore said.

Experts from the medical and scientific communities at the symposium will discuss various new and evolving Lyme disease tests utilizing DNA sequencing. These tests are believed by medical scientists to be far more accurate than standard serology tests. They are able to detect the Lyme and related borrelia bacteria, such as Borrelia miyamotoi at earlier stages of infection, unlike the current tests, and take far less time than the blood culture method to complete. Greater test accuracy and a quicker turn-around in test results means timely, appropriate treatment of affected patients and can help to prevent or minimize patient tissue damage resulting from undiagnosed borreliosis or to identify persistent borrelia infections due to poor response to antibiotic treatments.

For more information about the symposium and to register for this event, log on to:http://calrb.org/2014symposium.html

Symposium Agenda:

Date:

 

September 16, 2014

 

 

 

 

 

Place:

 

State Capitol Building

 

 

 

Legislative Building Annex

 

 

 

HartfordConn.

 

 

 

 

 

Time:

 

9:00 a.m. to 4:00 p.m.

 

--

 

8:00 a.m. registration and light breakfast fare – coffee, muffins

--

 

12:00 noon lunch break

 

--

 

12:00 noon PRESS CONFERENCE (media and key presenters only)

--

 

Afternoon session: 1:15 p.m. – 4:00 p.m.

Agenda Topics:

9:30 AM – 11: 00 AM16S rDNA sequencing testing for spirochetemia in clinical practiceSin Hang Lee, MD, Thomas Moorcroft, DO and Katherine Lantsman, MD

11:00 AM – 11: 30 AMRelapsing fever borrelia and the MSIDS modelRichardHorowitzMD

11:30 AM- 12:00 NoonThe need of testing for Lyme disease causative agents in clinical practiceDaniel J. Cameron, MD, President, ILADS

12:00 Noon Lunch BreakPRESS CONFERENCE (media and key presenters only)

1:30 PM- 2:00 PMPhilip Molloy, MD, Medical Director, IMUGEN, Inc. (pending confirmation)

Confirmed speakers:Sin Hang Lee, MD, Pathologist, Milford Hospital, Milford, CTThomas Moorcroft, DO, Berlin, CTKatherine Lantsman, MD, Boston, MA Richard Horowitz, MD, Hyde Park, NY Daniel J. Cameron, MD, President, International Lyme and Associated Diseases Society

Invited speakers:Paul Mead, MD, Chief of Epidemiology and Surveillance, Centers for Disease Control and PreventionPhilip Molloy, MD, Medical Director, IMUGEN, Inc. Norwood, MASally Hojvat, PhD, FDAGene N. Herbek, MD, President, College of American PathologistsBarbara E. Murray, MD, President, Infectious Diseases Society of AmericaJewel Mullen, MD, Commissioner, Connecticut Department of Public Health

CALRB is a newly formed Connecticut non-profit organization dedicated to informing the public, medical, scientific and political communities about developments in the fight against Lyme disease, specifically pertaining to the reliable diagnosis of Lyme disease and Lyme disease-mimicking borrelia infections.

Media:

For Coalition Against Lyme and Related Borrelioses

Kevin Moore, 203-788-8497

kjtm@calrb.com

Source: Coalition Against Lyme and Related Borrelioses

 

Carl Tuttle
HudsonNH 03051

Website: New Hampshire Lyme Misdiagnosis

http://home.comcast.net/~runagain/site/?/home/

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

Letter to the Editor, The Lancet Infectious Diseases Published May 2012

Sunday, August 3, 2014

Bartonella in blood doners' blood in Turkey

See comment in PubMed Commons below
Mikrobiyol Bul. 2014 Jul;48(3):477-83.

[Seroprevalence of Bartonella henselae andBartonella quintana in blood donors in Aydin province, Turkey].

[Article in Turkish]

Author information

  • 1Adnan Menderes University Faculty of Medicine, Department of Medical Microbiology, Aydin, Turkey. nerimanaydin@yahoo.com.

Abstract

Bartonella species cause several diseases in humans such as cat stratch disease, bacillary angiomatosis, peliosis hepatis, endocarditis, Carrion disease and trench fever. Cat scratch disease and bacillary angiomatosis cases have already been reported in Turkey. Studies from our region, namely Aydin (a province located at Western Anatolia, Turkey) indicated that mean Bartonella henselae IgG seropositivity rate is 11.5% in risk groups and may reach to 26.5% in pet owners. The aim of this study was to determine the seroprevalence of B.henselae and B.quintana in healthy blood donors in our university hospital in Aydin, for estimating the transmission risk via transfusion. The study was designed as a cross-sectional epidemiological study. A total of 333 samples taken from blood donors (49 female, 284 male) who were sequentially admitted to the blood center of the university hospital, in January 2011 were included in the study. All sera were screened in terms of B.henselae and Bartonellaquintana IgG antibodies by using two different indirect immunofluorescent antibody (IFA) commercial kits (Vircell, Spain; Focus, USA). Slides were examined at a final magnification of x400 on fluorescent microscope by two different assigned researchers. Fluorescent intensity was graded between 1+ to 4+, and the samples with fluorescence value of ≥ 2+ were considered as positive. The seropositivity rate of IgG antibodies to B.henselae was found as 3.3% (11/333) in blood donors. This rate was 4.1% in female, and 3.2% in male donors, showing no statistically significant difference between the genders (p= 0.668). B.henselae antibody titers were detected as 1/64 in 6 (1.8%), 1/128 in 4 (1.2%) and 1/1024 in 1 (0.3%) patient. All of the B.henselae IgG positive samples also yielded relatively low positivity for B.quintana IgG, possibly indicating cross reactivity. The fluorescence intensity for different kits used was found to be the same in all but one titer. The results reported by two researchers were found to differ only in the samples graded 1+ or below. However, the evaluation differences between the kits and the researchers did not affect the results. It was concluded that B.henselae infection might be found in the blood donors in our region, thus, a detailed questionnaire prior to blood donation might be helpful to prevent transmission of B.henselae by blood transfusion.

PMID:
25052114
[PubMed - in process]

Saturday, August 2, 2014

Action needed on Congressional Lyme Bill !!

This is from the LDA (Lyme Disease Assiociation). Please read through it if you are interested in better treatment for chronic Lyme patients' rights. This could be a game changer if we can get the right bill through Congress that calls for investigation of chronic Lyme disease and treatments for it. Please read below  and do what you can. It's not difficult (unless you are disabled, going through crazy Herxing, feeling like you are drowning in a sea of depression/anxiety, or so brain-fogged that even reading this blog entry will bring you to your knees. I'm not kidding. I've been there. I can remember when I could not even read a book or have a logical conversation with friends. If you can't focus or are in too much pain, skip this. If you are doing pretty well or you are a caregiver/spouse/etc. then please do read the legal history of Lyme bills that have been bounced around before Congress, below. 

-Bob

(Note from LymeInfo: Earlier version of this Advocacy Alert contained a link to an old, unsupported version of the Federal Lyme bill. Everything else is accurate. We apologize.)
 

Immediate Action Needed on Federal Bill

Advocacy Alert from the Lyme Disease Association, Inc., Jackson, New Jersey

July 28, 2014
http://www.lymediseaseassociation.org/index.php/federal-legislation/203-legislative-session-2013-2014/1248-attention-lyme-community-federal-bill-may-move-action-possible
or http://tinyurl.com/k8qk3tx

The Lyme Disease Association (LDA) is supporting HR 4701, July 23 version, no amendments, which will see committee action Tuesday 29 Wednesday 30. The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including "a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.... "     

Click link below for correct text (pdf file) of supported version:
http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf

Everything else below is accurate and appears exactly as it did in the post from earlier today. Thank you for your patience and support.



ACTION FOR YOU TO TAKE IMMEDIATELY:
 

Lyme leaders, patients,  general public: The LDA is seeking immediate action. Please contact the Democratic  members of the Energy Commerce Committee. Tell them to support HR 4701, July 23 version, with NO amendments. There is a short window of time (July 28-July 30) to influence the passage out of the Energy Commerce Committee of this important bill.

PLEASE DO THE FOLLOWING:

    • Click on this link. Pick out the Democratic party members (D) and call or fax them.

    • Tell Democratic Committee Members the following:

    "Pass HR 4701, July 23 version, with NO amendments(Please use exact underlined words when referring to bill.) 
    "This bill allows Lyme patients, Lyme non profits, and physicians treating Lyme tick-borne diseases to sit at the table of the working  group. The Strategic Plan for Lyme tick-borne diseases research calls         for a plan for improving outcomes of Lyme and other tick-borne diseases. Thank you."



HISTORY of LYME BILLS
: 
For decades, Lyme disease patients, advocates, treating physicians, and many researchers have pushed for federal legislation that would unshackle Lyme disease from entrenched biases that have been holding back progress on the science of Lyme.  Patient-supported Lyme legislation was again introduced early this Congress in both the House and Senate, legislation designed to provide broader input to federal research agendas and to help move the science forward. The Lyme community was then chagrined to learn that a vector-borne diseases (VBD) bill was going to be introduced and passed through the House instead of the other pieces of patient-vetted legislation. The community's fear was that the language of the VBD was too diluted and would be harmful to Lyme disease patients. In a sincere effort to cooperate with House and Committee leadership, members of the Lyme community worked tirelessly to improve the language of the VBD bill to ensure that it would be helpful to Lyme stakeholders.  The resulting bill – HR 4701 – while not ideal, was strengthened to ensure it would provide meaningful benefit to Lyme and other TBD stakeholders.




WHAT WE WANTED
: 
The original HR 4701 (below), as introduced, created an advisory committee that would operate under the decades old Federal Advisory Committee Act (FACA), which stresses transparency and accountability.  Congress passed FACA, because many believed that too much of the government functioned behind closed doors and did not sufficiently represent the public interest.  FACA requires committee membership "to be fairly balanced in terms of the points of view represented and the functions to be performed."  Under this original HR 4701, working groups/advisory committees would provide a seat at the table for experienced physicians, non-federal scientists, and patients and family members, and advocates.   Any existing VBD working groups also would be required to operate under FACA. 
A Bill Favorable to Lyme patients

The original bill introduced May 24th in the US House "HR 4701" (Gibson) provides:

    • Patients with a seat at the table
    • Transparency in government (Covered under FACA)
    • Open meetings
    • Balanced representation




WHAT CONGRESS SUBSTITUTED:
 

The "Amendment in the nature of a substitute to HR 4701," which was passed June 19, 2014 by the Health subcommittee, simply institutionalizes the existing HHS internal Lyme disease and other TBD working group.  The only members of the working group are HHS employees, no patients, advocates, private physicians or non-federal researchers will be working group members, although it directs the committee to "consult with" outside parties.  The HHS working group also is not under FACA─ its meetings, papers, records, minutes, etc. may be kept under wraps.   A single public meeting before the issuance of a report every five years does not provide a reasonable level of public input and transparency and likely occurs after the committee deliberative work is done. It is disgraceful that the substitute bill retains the words "Accountability and Transparency" in the title because the bill makes great efforts to purge itself of those attributes.  


Unfavorable to Lyme patients

The revised June 19th bill "Amendment in the nature of a substitute to HR 4701"(Gibson, Pitts) provides:


    • No patient seat at the table
    • Permits secret meetings (Not covered under FACA)
    • Provides no balanced representation on the working group
    • Permits the old boys' network to operate without oversight




THANKS TO LYME GROUPS: 

The LDA requested Lyme leaders to sign on to a letter against the Amendment in the Nature of a Substitute to HR 4701. Letter with signups was sent 7/7/14 to Energy Commerce with this note: "Attached please find a letter stating the position of 154 groups from over 35 states across the US opposing the Lyme disease legislation, 'Amendment in the Nature of a Substitute to HR 4701' that was passed through the Energy Commerce Health Subcommittee on June 19, 2014. This information was collected over an approximate three-day period over the July 4 holiday weekend. We look forward to your response. Thank you."

As a result of the letter, the bill sponsor, working with LDA and others, was successful in obtaining language that accomplished the goals of having patients at the table with a working group that operates in a transparent fashion. It also includes "chronic or persistent infection and co-infections" language. (Go to top of this post to see new version.)

SOURCEhttp://www.lymediseaseassociation.org/index.php/federal-legislation/203-legislative-session-2013-2014/1248-attention-lyme-community-federal-bill-may-move-action-possible
or Immediate Action Needed on Federal Bill